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Sleep and my heart transplant

I am one year removed from my heart transplant.  I am doing well physically and working on the mental part.  I am in support groups, have great family and friends support and am pretty active. I exercise, eat healthy, take my pills, follow-up, etc.

But sleep is getting less and less.  Now its down to three hours a night. I was trying to take a nap during the day, but that doesn't work for me.  Tried sleeping pills which did not help. I am getting anxious over it which of course causes more anxiety if I wake up at night.  I do have to use the bathroom sometimes at night but always went right back to sleep.  Now I am wide awake by 2 or 3 with the mind racing.

Anyone of this type of problem?

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  • Yep not gonna go away or get a lot better either. Just do the best you can. I'm four years out and haven't slept in two days as we speak. Usually get 3-4 hrs and that's it even with exercising 6 days a week. It your immunosuppressive meds that do it to u. Esp cellcept. Causes mind racing and insomnia. You'll learn to deal with it or what helps the best but it's everybody on here not just you!!! Read up on all your meds. Certain ones cause neuropathy and feet pain to!!
  • Just a question...... has anyone on here had a TAH? Total artificial heart transplant? I was the 6th TAH transplant ever performed in the whole Pacific NW at UW hospital in Seattle. Had LVAD for 6 weeks before clotted and then the TAH for 11 months before real transplant. Was a permanent resident in the hospital. Died twice along the way but I'm still here. And I had my transplant at 38 yrs old!!
    • no ,  but I had an LVAD for 14 months ,  I have never heard of a vad getting clotted ... thank god your here to tell your journey !  I am from central NY  I knew of 1 person who had a Jarvic  ..  very young man early 20's  I belive ,  not sure what ever became of him . I have a routine 6 month visit next week I gonna ask , what has become of him..

      • Wow David you hadn't heard of LVADS clotting? That's like the number issue with them. I know lots of VAD patients that had that issue. Mine completely clotted off in six weeks even tho my INR was great. My heart blew up like a blimp. If you ever start peeing what looks like coffee or coke colored urine it means you have a clot!! Glad to here u had no issues. I hated the LVAD and the artificial heart was down right scary. Cheap looking plastic air compressor backpack that runs on batteries !! It got me to transplant tho so I can't complain. Glad not to listen to that annoying machine run tho
  • Hi my name is Danny and I had a heart transplant almost 4 yrs ago and have NEVER been able to sleep more than 3-4 hrs a night. I exercise now 6 days a week and that doesn't even help. Sleeping pills put me to sleep but never prolongs my sleep!!! My mind races all night long sometimes. Almost everybody in my support group has the same issues along with medication induced neuropathy in the feet!!! I was 90 crippled and couldn't stand more than 10 min at a time and would vomit from the pain! I had to research my own meds and figured out which ones caused it and they aren't cured but I'm 80perc better and can do anything now!!!
  • I had a lot of difficulty sleeping for a while. I took muscle relaxants to help me get to sleep and stay asleep. Now that I am exercising regularly, I simply use valarian root tea to get me sleepy and relaxed. Works great!

  • Yes, this happens to me every couple of months when I neglect vigorous exercise. At first I was dumb and took some caffeine before bed to tire my heart artificially and make me go to sleep. It works but it gives you headaches. Then I tried sleeping pills, it works until it loses potency.

    Now I just jump on the treadmill and run on it as much as I can and then go shower and I fall asleep in seconds.You could also tried reading a book and avoid electronics an hour before bed.

  • If I get less than 6 hours of sleep for more than 3 nights, I get weepy, negative, irritable and much more easily stressed. That's much worse for me I think, than Ambien, but I also never nap.
  • Hey Paul ,  I am  over 6 years now and I also have same issues with sleep ...   when I  really need to sleep  I  take Tylenol pm  which  usually  gets me at least 6 hours ...   I  have found that the benedryl in Tylenol  works better then sleeping pills ...  I am  sure you have ran this by your tx  team  I am just curious what they advised  ,,,  seems every center have different ideas on this problem  ..  I  also walked every nite durning year 1 ,   which after 6 months helped out ,  For me when I walked alone  Seemed  to help  the mind wandering at night ...  hope this helps some ...  Congrats on your miracle   and your soon to be year 1 !!     keep up the good work  !!

    • Thanks for your thoughts and wishes.  Yes it seems that I have to get back to basics and not stress out over this.  Everyone's input has helped so you know you are not alone.  Walking and reading helps me but for some reason I stopped doing as much as I would like to do.

      The team gave my very mild Xanax and ambient but that has run its course with no real help. They Tylenol PM sounds interesting and I will run that by my team.

      Have to relax again and enjoy this miracle!

      Thanks, love your fishing picture as that is one of my favorite things to do!

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